Submissions on Draft Scope for the NICE Guideline Review, 2018

It looks pretty good, actually. Some things appear to have been taken onboard, and they're more anti-GET/CBT than they have been.

 

The Hope 4 ME & Fibro NI response is here:

https://onedrive.live.com/view.aspx?resid=EF3679C5FAA01331!2225&ithint=file,docx&app=Word&authkey=!AGKwvtChH-rJlyw

A quote:


On Facebook here

 

I think Action for ME have misapprehended the meaning of outcome measures in assessing evidence as meaning the outcome measures that should be monitored by healthcare providers when assessing patients.

 

Very likely. I think I made that mistake at first. I am glad someone else was more on the ball.

 

That section was not very clear

 

I did the same thing. Although the point stands for both cases. We don't want clinics claiming false improvement ratings.

 

#MEAction UK has its response here: https://www.meaction.net/2018/07/27...ices-second-draft-scope-for-me-cfs-guideline/

It's quite long, but there was lots to include!

 

@adambeyoncelowe
Am just jotting down things from the #MEAction one that I am not sure about:
p7 for concentration and memory: ADHD medication and other mild stimulants

also have you made sure everything included complies with their checklist?eg insertion of tables It says they will return it, unread, if you don't.

 

1. My Localme one; https://drive.google.com/open?id=1cj3Xyd1Yao2Bq2F6lRRX3VJg-BH2X3hR

2. VIRAS who are also on S4ME:
http://p11.hostingprod.com/@.../VIRAS/VIRAS_NICE_ME_Draft_Scope_comments.html


FINALLY....................
I had forgotten about the 2015 CQC initiative!
Wondering what they did with it?
Will follow it up!

Glad I mentioned CQC responsibility in my NICE submission...



The Care Quality Commission (CQC) describes their campaign as follows:
#InvisibleConditions campaign
For one week in November, we’ll be highlighting five different ‘invisible’ conditions on our social media accounts:

Monday – M.E. / Chronic Fatigue Syndrome
Tuesday – EDS
Wednesday – Hearing loss
Thursday – Mental Health
Friday – Arthritis
We want to hear from you about your experiences of care. Join the conversation on Twitter using the #InvisibleConditions hashtag, or tell us about your care through our website.

 

Hello! They've confirmed receipt, and not noted any problems. We've been a bit flexible with format before and not had any issues.

Re: meds for brain fog, I think my feeling on that was that we at least want the questions asked. It's not about coming to conclusions at this point, but looking for evidence.

If the questions aren't asked, then there's no chance of them getting in or getting refuted. It's important to at least look at the major symptoms, the treatments some clinicians use for each, and then the evidence for those options, even if the guideline eventually decides 'don't use these'.

For example, I know lots of clinics experiment with antidepressants, antipsychotics and stimulants in their ME patients even though it's not in the NICE guidelines. I don't think that kind of experimentation is usually in our best interests, since the drugs may simply placate patients or make them more docile without addressing underlying problems.

There's some minor evidence about modafinil that we want the GDG to look at, as well as some negative antidepressant studies. I think stimulant (ADHD drugs) studies also show a negative response, and that's worth including.

 

So have I misunderstood, as it seems to suggest ADHD drugs are potential treatments?

"Many of these symptoms can be addressed through commonly available treatments
that are relatively cheap to deliver and can improve quality of life. There are
interventions suitable for common symptoms:

●Post-exertional malaise: pacing; breaking large activities into smaller ones with
rest in between
●Orthostatic intolerance: drugs that increase blood volume; beta-blockers
●Pain: bodywork; pain medications
●Sleep: prescription or over-the-counter sleep medication
●Concentration and memory: ADHD medication and other mild stimulants"

(also what is 'bodywork'?)

 

Maybe @Jenny TipsforME and @Nathalie Wright can help? I didn't write that section.

ETA: I don't know about body work (massage, maybe?) and I have no strong feelings either way re: stimulants.

 

AFAIC the jury is out onstimulants for concentration and memory, I've seen mixed remviews in the mild - still at school work - and certainly in the severe where these problems are more extreme, I don't think they're the answer at all as they prevent rest, no stimulant allows for ten minutes brain activity, an hours rest, once in you're "on". . My experience with Ritalin and modafonil was bad. The mild, some find them help with clarity and focus in their daily lives but other s say they just give illusion of false energy with inevitable crashes. I'm not sure enough context is given withOut trivialising the brain issues as fixable with drugs. Saying that I do think they should be available for the right type of patient.

 

https://twitter.com/user/status/1023553070255546368

 

It is not about ME, it is not about Severe ME


July 26, 2018
Stonebird Response to NICE Guideline draft Scope Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

https://carersfight.blogspot.com/2018/07/it-is-not-about-me-it-is-not-about.html

 

(Thread merged)

ME Association: NICE ME/CFS Clinical Guideline Review: ME Association Submission re: Scoping Report | 02 August 2018

http://www.meassociation.org.uk/201...-submission-re-scoping-report-02-august-2018/

As part of the continuing review of the current NICE guideline for ME/CFS, the ME Association as a stakeholder in the process responded last week to the draft scope report.

This submission is set out for you to read below and the original is available as a download.

We are very grateful to everyone who took the time to share their own opinions with us...

 

Seems pretty good.

This stuck out to me though (my bold)

No mention of the potential to develop new symptoms for the duration of PEM.